u/CleverUserNameNumber

I'm in the mid Atlantic eastern US and while I'm not entirely sold on my diagnosis, I'm moving forward with nerve blocks and what not. So far the only thing that's had an effect on my pain is the nerve study, which has left me in a lot more pain, going on 6 days

Id like to find an expert on this condition, ideally other neuropathy as well, within a few hours drive, but I'm willing to go farther if necessary .

Anyone have suggestions for someone in NC, SC, VA, East TN or beyond if necessary?

I have developed a nerve condition that has reduced my mobility quite significantly. I'm still trying to stay fit and enjoyed using my zwift ride before, but can no longer pedal a bike. While the game has an option for a hand cycle avatar, the only conversions I've seen to actually use one are connections to an outdoor hand cycle. For those who don't know, outdoor hand cycles are quite niche and very expensive (think high end tri bike expensive). This is out of my price range as my condition has significantly impacted my future income potential as well.

I have a zwift ride and wahoo kicker, and have tried a cheap home tabletop hand cycle and some software work arounds that use HR to approximate power, but it's not really the same. I also found someone selling custom brackets to flip the wahoo kicker, but what then? Not to mention they want $2500 for a metal bracket.

A long shot but I'm hopeful someone here has worked this out and my googling skills are just weak.

Edit: I've read about work arounds for concept 2 ski erg as well, but would be a lot to spend if the integration is similar to the workaround I'm currently using for the tabletop hand cycle.

I apparently meet enough of the Budapest criteria to be diagnosed, and my symptoms make sense, however I'm still on the fence as my case is a bit atypical (I had no acute injury, only overuse from exercise that lead to BME, almost completely symmetrical in but feet/ankles).

I had a nerve conduction study yesterday, and my pain has increased a ton. I understand this is pretty common after the test, for people with CRPS. My searching indicates someone with a healthy nervous system would not have this reaction.

It seems to me this points to at least some kind of neuropathy. Looking for others opinions.

Thanks in advance.

TLDR: I think I may have CRPS, due to wide spread BME in both feet/ankles. First consult today, what should I be asking? What should I request for diagnostics? What pain reliever have people had success with (I see Lyrica mentioned often here)?

My apologies this is so long

Long Version: I developed pain in both my inner ankles around mid November, after recovering from Achilles Tendonitis on my left side. I had increased my exercise load training for a race and was initially diagnosed with Posterior Tibial Tendonitis and instructed to continue my strength training/PT with a reduced exercise load. Advice on Tendonitis is, if pain is < 3/10 during any activity, the activity should be continued, and pain while working on strengthening the tendon should be expected. So I dutifully followed this medical advice, even as the lingering pain increased. I had seen 6 different specialist during this time. All told me to keep after it, and it would heal.

Finally in mid Feb it became obvious this wasn’t working and I went back to one of the orthos who had confirmed my Tendonitis and he agreed to order an MRI. Turns out my tendons and joints are in great health but I have Multifocal BME, which the radiologist notes is often associated with CRPS. However the Ortho discounted the CRPS portion and told me I just needed to reduce exercise load until I found a balance. I reduced training load pretty quickly after doing my own research. Fast forward to now - early June - and I’ve seen multiple other doctors and am now 0 weight bearing on the left side, and almost none on right starting 3rd week. So wheelchair bound in essence. The pain during this non-load bearing period has not improved, and if anything has gotten worse. This continued pain worsening even during de-loading has been pretty consistent.

I have an appointment today with a Pain specialist/Neurologist and plan to tell them about my symptoms/observations which include:

- Deep aching/burning. The level of this fluctuates, sometimes load dependent, sometimes it seems entirely detached from actual ankle/foot loading.

- Increased pain, even as I’ve decreased the load on my feet and ankles over time

- sensitive skin with discoloration (this is fairly new)

- Pain spreading to new areas (anterior ankle for example) without any known cause.

- Limited relief from strong NSAIDS/Tylenol/Muscle relaxers

- Some pain relief from Xanax

- Much pain relief from THC

- all metabolic testing has come back pretty normal - I’m currently on Risodendrate sodium and Teriparatide for the bone injury.

I’m actually very much hoping I just have some really bad BME, that’s taking a long time to heal, but it seems to me the evidence is pointing towards something more.

After reading all that, what kind of questions would you ask , knowing what you know now, at your first consult/visit with a neurologist?

Thanks, in advance for any insights.

Edit update. After my exam yesterday the neurologist/pain specialist does believe it's CRPS. We are starting lyrica and doing some nerve blocks as treatment and diagnostics. He actually has some experience with the condition and feels we may have caught it early enough that we could have some success with just these. Here's hoping. Thank you all for your responses and involvement this community/subreddit.

TLDR, need to find a pain management specialist in North Raleigh/Wake Forest.

I have a fairly rare bone condition/injury (originally misdiagnosed which led me to continue to damage myself doing PT), which due to its rareness, I’ve had quite a difficult time finding a specialist who would even treat. Well I have finally found a provider who will treat me, but the most she will do for the pain is typical NSAID medication and Tylenol. Long term pain management is not something osteo/ortho doctors are really that familiar with, and my GP isn’t comfortable doing anything stronger either. I’ve been in consistent pain for 6 months now and prognosis is I’ll recovery over the next 3-24 months (F me).

If you know a good pain management type doctor in the triangle, preferable further north, I’d appreciate their contact.